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Seizures/how to dose CBD/medical marijuana

Epilepsy & Seizures | Last Active: Mar 22, 2023 | Replies (66)

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@santosha

Hi @keeg1010 (Kerry) again!
Based on my own experience, being treated by an epileptologist has made a difference to me. I believe this is especially true for those that have refractory epilepsy as I do. I also have left temporal lobe epilepsy with mesial sclerosis. As Dr. French (renowned epileptologist) has said in one webinar, a general neurologist will hardly be up-to-date with all the latest developments in epilepsy.
Before trying CBD, I have taken Vimpat/Lacosamide (the worst of all 5 AEDs I have tried, terrible side-effects) as well as Carbamazepine (could also not tolerate the side effects – got very depressed). I still take carbamazepine but in a very low dosage together with pure CBD.

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Replies to "Hi @keeg1010 (Kerry) again! Based on my own experience, being treated by an epileptologist has made..."

Thanks for responding so quickly. @jakedduck1 recommended my son see an epileptologist as well. We've seen neurologists but I'm going to have to do some research on epileptologists in my area. I would think Mayo would have one?? We have only tried Lamactil and just increased the dose to 200mg twice a day. My son's neurologist said the next thing she would add is Vimpat if he's still having breakthrough seizures. He's only had 3 total (started late last year) but they are scary. He is non-verbal but can vocalize. He will yell out right before the seizure but you have one second to get to him before he loses consciousness and begins to convulse. The seizures last about 45 seconds and then he's "out of it" for a few minutes and then wants to sleep for a couple of hours. This is all so new to me but scary, as his last seizure caused him to hit the tile floor and gave him a black eye. I definitely would like to try CBD (esp since we are weaning him off Buspar) to see if it helps with both seizures and anxiety. He already takes so many meds, I just don't want to add a bunch more. It's hard since he can't tell me how the meds make him feel. I can see obvious reactions but would never know if he was getting headaches, depression, nausea, etc. Is the pure CBD a prescription or do you go to a dispensary? Thanks again!